Preface

Owned by Mohammad Al-Ubaydli
Last updated: Sept 05, 2024 by Federica Andreoni
4 min read

A story…

Why personal health records?

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In England, 1 in 17 people has a rare disease [Donaldson, 2010]: most of these people know more about their situation than most of the doctors looking after them. 25-50% of patients at hospitals are from outside the region [PKB research 2024]: the hospital does not have access to the records from outside the region. Long-term conditions accounts for about 70% of the money the country spends on health and social care [Nuffield Trust, 2024]: what these patients do matters more than what their doctors do.

These three are the drivers for a health record that is organised around the person. A personal health record. This recognises the patient’s knowledge, starting with rare disease patients. The record moves with the person, as expensive patients travel long distances to hospitals. And daily data from the person’s body and actions determine health and death more than a hospital’s episodic data.

Why governments?

Governments accounts for the majority of health care spending in the majority of countries. In the UK, the publicly owned National Health Service has long dominated accounting for 80% of health care spending. Government spending still dominates countries with majority private providers. Even in the USA, public health spending was 52% pre-Covid in 2019 (up from 44% in 2000) [World Bank, 2024]. The trend of increasing government funding accelerated during Covid.

Governments are the insurer of last resort. They are the only ones taking on actuarial risk, socialising the risk of health care costs. Governments - not private insurers - are the ones covering rare diseases, long distances and chronic conditions.

Therefore it is governments who are leading on personal health records. Private providers build organisational portals that lock the patient to lock the profits with the provider. Private payers' investments in portals stop when the member changes payer, and the member knows this, so they do not engage. Only the government has a financial incentive at scale to organise data around the citizen.

Governments often start with government-owned providers: the Department of Veterans Affairs in the USA went first and farthest in personal health records while private providers focused on organisational portals. Across Europe and the Gulf, public providers carried out data sharing instructions first and faithfully. In India, public providers are the sleeping giant that will likely transform the % of data shared in structured coded format rather than the current scanned unstructured uncoded PDFs of private providers.

 

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Why now?

No government can deliver universal coverage in the 21st century without personal health records. As people with rare, distant and complex situations live longer, their care is unaffordable if professionals do everything. Not every patient can do everything, but many can do lots, and they must be allowed to.

Yet every government is expected to contribute more for universal coverage. Covid cemented this trend.

 

 

The share of government contribution is highest in the highest incomes, and as countries income rises the government share rises.

 

 

Therefore every government must find a solution for personal health records for its population.

Why the book?

But governments do not know how to solve this problem. They lack the skills to build, and they lack the trust to buy. They understand personal health records are critical infrastructure for the 21st century so are fearful of making mistakes. Many build limited, idiosyncratic national solutions.

This is a good starting point. It is a long way from the destination. They start with transparency: a promise by the government to its citizens that data about the person will be visible to the person.

The private sector delivers engagement: driven by competition, a focus on usability means more people look at more data more quickly.

Activation is the goal: a citizen who understands what is happening and knows what to do about it. It will take a global competitive industry of solutions to deliver this, just as the internet delivered two decades ago in other industries.

The goal of this book is to raise the game of governments. By documenting the efforts of different countries, officials can learn from each other more quickly. It is also to tilt trust as some governments have worked with the private sector and some of those efforts have worked. We all must deliver activated citizens. There is no time to lose: the demands of ageing, obesity and workforce are crushing health systems; but the advances in sensors and AI are astonishing.

This book is to seize the opportunity and dodge the disaster for health of mankind.

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